Side Effects in Cycle 5 and Other Developments

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Side effects in general have been similar to Cycle 4 other than a significant escalation of fatigue and shortness of breath, starting suddenly on Day 5 continuing to Day 19 when it began to ease a little.

During this period I was completely exhausted just by getting dressed, having a shower or just walking a few steps in the house. After climbing the stairs I had no option other than to rest for several minutes to recover my breath (obviously made worse due to having lost my right lung 10 years ago). From days 5 to 19 my estimate of severity was 9 / 10 which then eased to perhaps 5 / 10. At the same time I completely lost my appetite and had to force myself to eat some calories whenever possible as well as keeping hydrated. 

Met with consultant on Day 16 when he decided to postpone Cycle 6 for 7 days as well as pausing Darolutamide for 7 days to see if I recovered.

Next meeting with consutant on Day 23 (by which time fatigue / SOB had eased a little) resulted in the decision to cancel Cycle 6 altogether and resume Darolutamide permanently.

He was very concerned I could deteriorate further in Cycle 6 and because of my lung situation any potential infection would be very serious indeed. He also referred to the chemo I had 10 years ago (cisplatin and vinorelbine for non small cell lung cancer adjuvant to surgery) and that the effects of this are still with me, restricting the full extent of possible recovery between cycles of Docetaxel. Who would have thought this was possible after such a long time?

He believes I've derived sufficient benefit from 5 cycles and the benefit of a 6th cycle is far outweighed by the risks of having it. He was keen to restart Darolutamide and therefore continue the long term Triplet Therapy I have started. I'll see him again in 4 weeks for a final check before the long term CNS led monitoring takes over - and hopefully continues for many years.

I'm disappointed but there's obviously no alternative and I've accepted that it's in my best interests.

So, I'm now in the recovery phase a little earlier than I expected although I'm told this could take several months. In case my experiences during this period are of interest or useful to record for anyone embarking on this course of treatment I'll post progress updates every few weeks or when anything significant happens. In the meantime I've been pushing myself to exercise and have managed to walk between 5,000 and 6,000 steps a day over the past week which I'm trying to build upon. 

Anonymous
  • Hi excavator,

    sorry to hear that you aren't having cycle 6. I started cycle 5 on 18th of October and my goodness it has knocked me for 6, the fatigue is horrendous and far far worse than any of the previous cycles, these last 3 days I've hardly been able to muster getting up and when I do I end up having to rest almost immediately.

    I lost my taste after cycle 1 but it almost returned to normal by the end of cycle 3, then it went again with a vengeance on cycle 4, everything tastes horrendous and about the only thing I can manage are Weetabix or plain cream crackers. 

    Anyway I hope you're now feeling better and still managing to increase your steps.

    Regards 

    Sprinter 

  • Thanks Sprinter, the fatigue is bad isn't it? Mine has now subsided somewhat and I'm doing very well with the steps which helps.

    Unfortunately I then developed an infection under my thumb nail a week ago which is still clearing up on double-dose antibiotics but has been quite difficult and remains so. The chemo unit people say this is quite common and I can also now look forward to probably losing some of my finger nails over the next week or so (they have turned black since my last treatment) which will then grow back slowly. 

    I hope you soon get rid of the fatigue and regain your appetite ready for your 6th (and final?) cycle.

    All the best,

    Derek.